In need of some reasurance (re the future)...

Might it be an idea to contact your specialist nurse and see her face to face? 

I feel very uneasy about talking with a nurse or a doctor behind his back  - somehow not the case with the forum ;) 

Plus, not really a possibility - since we came to the UK (20 years ago) we live together, we work together and we spend time off together. We're like conjoined twins. As strange as it might sound, he's in my life 24/7

So it would have to be a conversation in his presence. For which I have to get more courage to attempt.

Hi Iska , well done for plucking up the courage to join our group and welcome.  Firstly we are all different but not sure my diagnosis is too far away from that of your OH’s.  I was diagnosed with advanced prostate cancer 7 years ago and I am still here!  Sounds like your husband is tolerating chemo well (I only managed 4 out of 6 sessions). I then had RT for 37 sessions.  There are loads of new treatments and drugs coming along, so you will both be fine.

Stay positive and ask whatever you want to know.  I am sure others will be along to give you advice and support.  Best wishes, David

Sorry to hear your sad news.

my story is that I was diagnosed T4 M1 N1 gleason 4+4. PSA 26.5 Six cycles of chemo followed by 37 sessions of radiotherapy, HR Zolodex 10.8 tummy implant every 3 months. PSA dropped to undetectable for 3 1/2 years. 2 years ago PSA went from undetectable to 1 in a year, placed on abiraterones  PSA back to undetectable since April 2023 so I’ve been on treatment for a little over 5 years and living life to the full. Positivity is the treatment. I hope you’ll find comfort from my story and benefit from it.

Hi Iska and a warm welcome to the forum, though I am sorry you have to be here, We have all been where you and your husband are now and remember the awful time you go through with tests, diagnosis, the waiting and treatment starting, It is the hardest part of any cancer journey and is just as hard on you as it is on your partner, Iska nobody here can give you a prognosis for your husband, though as I  have similar stats I can give you mine, I am  Gleason 10, T4 N1 M1 and advanced, aggressive and metastatic, diagnosed 2 years ago, my cancer was in 9 places though after radiotherapy it is now in 6 places and at recent oncologist meeting was told 5 more years, and life is good "mostly", This is only my opinion but your husband is going to find out his prognosis one day, most guys on here wanted to know theirs as soon as possible, including those of us who can't be cured, maybe your husband would like the same, powodzenia.

Eddie xx

Hello Iska .

A warm welcome from another wife here whose husband was diagnosed almost 4 years ago with advanced metastatic prostate cancer who is on Prostap for life. Hubby initially had 33 sessions of EBRT to the pelvic area which has successfully dealt with the cancer in the prostate plus the lymph node mets in that area. He was initially on Bicalutamide for 18 months, followed by Enzalutamide for 18 months due to a recurrence of mets in the upper abdomen. Enzalutamide was stopped and 6 cycles of Docetaxel followed which dealt with some of the mets but not all so April this year he had 5 sessions of SBRT to zap these. From reading people's experiences you will see that treatment routes vary but the intention is to stay on top of the cancer for as long as possible. We are reassured when our oncologist says he has plenty more tools in the toolbox thanks to all the research and trials that have been done and are still ongoing to develop more. Our oncologists also stressed that he can only do 50%. The other 50% was down to us in terms of lifestyle (diet and exercise) plus having a positive attitude which helps the body to heal itself. No one can predict what journey your husband's cancer will take but keeping him as fit and active as possible will help provided he doesn't overdo it so he must listen to his body and rest when he needs to, particularly whilst undergoing treatment. For some men hitting the cancer hard at the beginning with chemo, radiotherapy and HT can hold back for a long time or even eliminate the cancer whereas for others it is a cycle of recurrence and different treatments.

With regards to the side effects from the HT, some men find relief for hot flushes by taking sage tablets or tea but before taking any supplements you should always check with your medical team first as some can interfere with the way that treatments work e.g. Evening Primrose oil may increase the cytotoxic effect of taxanes (used in chemotherapy) and affect the red bloods.

Now that you have found us I hope that you are not feeling so lonely. Many of us feel that we are part of an extended family, most of whom we will never meet, but we have a vested interest in each others journey. We share the good times, help each other through the bad and reassure when the inevitable wobbles crop up.

There is always someone around to answer questions so ask away and join in with other threads if you want. I hope your husband continues to cope well with the chemo and let us know how he gets on. Don't forget to look after yourself as well.

Hi Iska,

I understand so much how you feel. One day you planning your life ahead and then come the diagnosis with all these horrible words as you put it. Last night I had a dream that my husband is dead but guess what? In my dream he was 90 years of age. He is 75 now. I woke up and the first thought was 15 years to go! In the last 8 months since diagnosis my constant fear is that we are not getting the top treatment but just what they call standard of care. Saying this, standard of care is extremely strong treatment with 2nd generation HT and just finish high dose 6 sessions of RT.

But..our life is almost normal. We active, we doing exactly what we did a year ago before diagnosis. We are positive and we are fighting this bastard together. My husband is very sporty and swim every morning and I say to myself, as long as he swim he lives.

This community is a God send. Feel free to write anything you want, rant, cry and we have lots of loughs here. People here are so supportive like a very close family. And on this community here, all the people know how you feel.

Lots of love

Dafna from rainy Brighton

Morning Eddie,

Are you getting the implant injection today?

Lots of love

Dafna

Morning Dafna, don't have implant injections, unless you mean my HT jab which i have just had and PSA results which have doubled again, that's three rises in a row so will be having a PSMA PET CT, if hospital not forthcoming will go private. How are you Dafna, I know it's been tough for you lately emotionally, but we all have those days and the negative thoughts, and why wouldn't we, as you say "we are fighting this bastard together", wishing you and Jacob all the best, take care.

love Eddie xx

Hi Eddie, I hope you can get the timely care you deserve on the NHS  and don’t need too raid the piggy bank - and more. I just want to say how lovely and kind you are to reach out to support others so readily and so generously in the midst of your own anxieties. Thank you!